The Human Enhancement Debate and Disability

New Bodies for a Better Life

M. Eilers, K. Grüber, C. Rehmann-Sutter, M. Eilers, K. Grüber, C. Rehmann-Sutter

• Publisher: Palgrave Macmillan
• Year: 2014
• ISBN:
  9781137405531
• Topic: Social Sciences
• Subtopic: Global Development Studies
• Index: Social Sciences

Improving human characteristicsgoes beyond compensating for an impairment. This bookexplores the rich and complex relationship between enhancement and impairment, showing that the study of disability offers new ways of thinking about the social and ethical implications of improving the human condition.

1

Refocusing the Enhancement Debate

Christoph Rehmann-Sutter, Miriam Eilers, and Katrin Grüber

Superhumans (and the monsters in their shadow) have populated cultural imagery since the times of Mary Wollstonecraft Shelley and her Frankenstein. In Shelley’s novel, the purpose of enhancement is improvement – ‘what glory would attend the discovery, if I could banish disease from the human frame, and render man invulnerable to any but a violent death!’ (Shelley 1993, p. 23) – but the results prove disastrous for those directly affected. The power to alter the human condition for the better by constructing better-abled bodies cannot be reduced to a simple matter of good or evil, but is itself deeply ambivalent. It may appear to be an irresistible, sometimes even morally tempting power, seemingly in the pursuit of good, but such a pursuit is also rife with hubris and produces many parallel disadvantages. This ambivalence is captured in the narratives of cultural imagery, where the beauties and the beasts, the heroes and the monsters, frequently appear as closely related, even as two personae of one and the same individual, one lurking just beneath the other.

The significance of enhancement, both in fiction and in reality, has not remained the same since Shelley’s times, when the old experimental superhumans represented fictive attempts to conquer the roots of disease, evil, or death. To capture the intricacies of enhancement thinking and cyborg technologies, we can distinguish between different directions of ‘improving’ (see discussions in Hauskeller 2013): becoming smarter, making humans morally better, making them feel better, making them ‘truly human’, living longer, looking better, getting stronger, or compensating for natural frailty. We can also distinguish between currently possible interventions on the one hand – such as cosmetic augmentation of body shape, smart prostheses such as artificial limbs, mechanical exoskeletons, or implanted hearing aids – and more theoretical and futuristic ideas on the other – such as elimination of aging and death, deep genetic redesign of human bodies to something that is beyond human, or intelligent electronic brain implants to improve mental performance.

The debates about ‘transhumanism’ and future developments in enhancement are most frequently staged as a set of abstract moral questions (see Savulescu and Bostrom 2009), often referring to imaginary futuristic scenarios of what might be possible ‘if and then’ (Nordmann 2007, 31ff.). This discourse, as many of those who contribute to it themselves have complained, lacks concreteness. We believe that the perspective of disability will contribute towards substantiating the enhancement debate.

Disability studies

Even though the question seems to be an obvious one, it has rarely been raised in academic bioethics debates on enhancement biotechnologies: how does enhancement relate to disability? At first glance, the relationship might seem simple: enhancement is the gain of function, disability is the loss of function. One relates to something above normal functioning and the other below, like mirror images with the level of normality as their axis of reflection. A closer look, however, reveals a tremendously rich and complex relationship, whose exploration proves fruitful in discovering what enhancement is really about.

Disability studies, an interdisciplinary field of anthropological, social, philosophical, and political research, have shown that the common view of non-disabled people of disability as a loss of function is both far too narrow and far too discriminatory. If we see disability as implying a life of missed possibilities and opportunities, as a ‘harmed condition’ (Harris 1993, 180) or a ‘physical or mental condition we have a strong rational preference not to be in,’ (Ibid.) as John Harris has described it, (see Chapter 9, this volume) we are adopting the general perspective that has been described as the ‘medical model’ of disability: ‘From the medical point of view, people are disabled when they are less functionally proficient than is commonplace for humans, and when their dysfunction is associated with a biological anomaly’ (Satz and Silvers 2000, p. 173). Medicine, accordingly, aims to reduce, preferably to cure, such dysfunction. According to disability studies, operating within the medical model of disability disregards crucial contextual factors, and sometimes, rather than easing the physical or mental impairments of those classified as disabled, actually creates further problems.

The founding credo of disability studies has been the ‘social model’ of disability, which shifts the attention away from the physical or mental impairment to the living conditions and societal situation in which an impairment becomes a disability and manifests itself as a problem. The approach started as a ‘materialist’ one in the sense that it looks for the social causes of all harmful or negative aspects of disability. A disadvantage of this approach is that it tends to overlook the effects of impairment on the individual experience of disability and therefore cannot really explore the differences between different impairment groups.

The most recent versions of the social model of disability consider that the experience of disability is a composite of factors that emerge within a wide context. However, there are also intrinsic factors, such as the type and severity of impairment, the attitude of the person towards this impairment, and her or his personal characteristics and possibilities. Furthermore, there are extrinsic factors, such as the attitudes and reactions of others, the presence of a supporting or disabling environment, and further cultural, social, and economic issues. Proponents of the social model approach in disability studies have experienced some difficulties acknowledging this ambivalence in taking into account the condition of the body while also working on the grounds that well-being depends on social circumstances and society’s capacity to recognize all of the specific needs of people with variant bodies beyond simply the internal/external condition of the body (Shakespeare 2006, pp. 29ff.; Williams 2001). In one consensus perspective, disability can be viewed as ‘a dynamic interaction between health conditions and contextual factors, both personal and environmental’ (World Health Organization and The World Bank 2011, p. 4).

The social model approach indicates that medical improvements do not always have a positive effect on people with a disability; rather, their effects may be multiple and as dependent on social and cultural factors as the disability itself. It considers the limitations of the assumptions made by those with ‘normal’ bodies of what life is (including notions of a ‘good life’) for people with variant embodiment and of the biopolitics of human difference. This way of thinking is sensitive to the social conditions necessary for leading a good life, including the importance of variant bodies (Blume 2012; Scully 2008; Shakespeare 2006; Vehmas 2012). The perspective of disability studies might also be necessary, therefore, to bring the enhancement debate onto more reliable ground.

Tom Shakespeare (2013), in capturing the state of current research in disability studies, distinguishes different directions or approaches to disability. Apart from the ‘materialist’ approach there is a direction called the ‘cultural’ approach, in the sense that it looks for the social and cultural construction of the dichotomies that underlie the experience of disability and normality. Disability itself becomes a social construct that needs to be deconstructed, using the analytical instruments of poststructuralism or critical cultural studies. Another direction that also tries to meet this difficulty can be called the ‘realist’ approach (or better, ‘critical realist’ or ‘post-social-model’), in the sense that it is primarily interested in the empirical investigation of the life conditions and the needs of differently impaired and disabled people in different places, countries, and situations. We believe that all of these different approaches to disability might have something to contribute with regard to the topics discussed in this book. The chapters will draw in different ways on the concepts from these three approaches to disability, as well as on existing knowledge about the phenomena and social processes of disability.

Our working hypothesis is that connecting the two fields of enhancement bioethics and disability studies brings both forward and infuses each with a new set of questions. Just as the enhancement debate lacks the perspective of disability, disability studies lack the question of enhancement and technology development. The contributors to this volume have thus investigated the intimate, ambiguous, and in many ways significant relationship between good lives and (better) bodies, and the role that enhancement technologies could and should play in this relationship. It is an interdisciplinary book that combines philosophical, anthropological, and sociological disciplines with cultural studies. It aims to invite more grounded discussions about enhancement, which set aside the counterproductive and reductive division between dis- and plus-ability research.

The authors assembled in this book do not all share the same approach to disability, but they are all skeptical about the medical model of disability and about biomedical practices that reduce the experience of people with disabilities to their impairments. We acknowledge the importance of medical progress for disabled people, but this in no way excludes the possibility of skepticism regarding the medical model in terms of explaining disability. Medical-technical developments in many fields have improved the lives of people with a disability, and many experience severe problems if they do not have access to the health care system (Grüber 2012; WHO and WB 2011). The medical and ethical issues connected to strategies to find appropriate solutions for the problems that people with disabilities face are, however, not the topic of our book. Rather, the central issues in this volume are questions around the concepts of normality and normativity, which contribute both to the enhancement debate and to disability studies.

Where does the idea of normality, which is crucial for the therapy– enhancement distinction, come from? How relevant is the concept of normality? What is the hidden normativity within the concept of normality? And what kind of normality is relevant? Is it

• the statistically average functionality in all species members;

• species-typical normality (whatever the word ‘typical’ means here – for example, an ideal, as in the sociological term ‘ideal-typical’, or a necessary minimum just fit for survival of the species); or

• an individually experienced state of accustomed embodiment?

It is important to look deeper into these concepts in order to obtain a clearer picture of the possibilities of enhancement.

The biopolitics of a debate

There are several reasons why the enhancement debate excludes the perspective of disability and disability studies. For one, the perspective of disabled people is generally underrepresented in the various debates within bioethics (Scully 2008). Another concrete reason might be the widely shared assumption that enhancement is conceptually distinct from repair, therapy, or prosthetics. This distinction is defended by referring to the idea of normality: enhancement is what brings the human body beyond normal functioning, whereas repair and therapy bring it back to normal. In this sense, prostheses or disability aids should imitate a normal embodied function, replacing the natural limb or sense with an artificial device. Even though they may enhance the shape and function of an individual’s impaired body, they are therefore not enhancements.

The ethical issues of medically assisting persons with disabilities in their lives or the ethics of medically eliminating disabilities are separate from those ethical issues that surround interventions that go ‘beyond therapy’ (President’s Council 2003). This framing of biotechnology as having the potential to repair or enhance is the standard ‘order of things’. It implies – like all order – politics (Foucault 1974). If it is taken for granted, disability marks the space underneath the table at which ‘normals’ take their seat. Normality is, moreover, constructed as a dividing zone, from which some forms of embodiment deviate – either towards the negative or the positive.

The discourse on the social and ethical implications of human enhancement technologies focuses on the issue of moral permissibility. Is it morally permissible to enhance in a specific way? Or are enhancing interventions intrinsically wrong; should they be banned by law? The objects of controversy are frequently hypothetical endeavors, such as advanced germ-line technologies for creating new generations of children with a longer health span, creating increased ‘moral strength’ or additional senses through the use of imaginary nano-bio-cogno devices to be implanted into the brain, or even the idea of switching human life forms to a digital form of existence through uploading minds onto computers. In a moral and also regulatory perspective, the main question of interest here is: should somebody who has the desire or interest to do such things be allowed to do them or not? This is a difficult question, for the simple reason that we do not know enough in order to address it properly; this is why enhancement is a challenge that calls for ‘postconventional’ ideas (Shildrick 2005). Enhancement is, insofar as it puts the question of the conditio humana at stake, not only a futuristic discourse. It also points to the present, since it is already modifying the current academic and public dialogue about the body, as well as taking ethics to the past. How, therefore, can concepts from modernity fit postmodern (such as enhancement) discussions (Shildrick 2005, pp. 3–4.)?

How can ethics – which far too often takes ‘what it means to be human’ for granted and has a strong tendency to rely on modern templates when imagining new (future) knowledge (Ibid.) – take a stance on enhancement? One answer would be to admit the unfamiliarity of the consequences of such knowledge and pursue the link between enhancement and disability, as both an example of thought and a training of thinking. In this sense, our book contributes towards reconfiguring the ethical framework of the enhancement debate.

Michael Hauskeller pulls attention in a slightly different direction when he observes that enhancement, in a strict logical sense, is rather impossible: ‘we lack any clear idea of what it would actually consist in without being aware of that lack’ (Hauskeller 2013, p. 186). The lack of awareness of this lack of insight is dangerous because it is not recognized. The enhancement projects we are talking about are planned within an instrumental rationality. Such instrumental rationality, however, has its limits, because it is not clear whether the improvement (according to whatever scale) will be a real betterment overall for the persons affected and for their social relationships, or whether it will be at least ambivalent, or possibly even prove to be harmful. What seems to be good in certain respects might be bad in others. What is clear is that enhancement would, in a certain respect, imply ‘more than good’: we should demand an improvement of the human condition or human well-being.

What would the relevant understandings of ‘morality’ and ‘the good’ be in order to decide upon such questions? On what grounds could someone be denied access to enhancement technologies (if available), and on what grounds could the application of such technologies be ethically legitimized?

It would of course be better to begin to explore this murky terrain of upcoming biotechnology early and assess its potential effects well before the fact, that is, upstream in the flow of biotechnological innovation. However, it is not so clear how to frame the ethical questions at this point, when many things are still so vague and hypothetical (Rehmann-Sutter and Scully 2010). Even though some scientists and scholars do argue that at least some enhancement developments are already quite realistic, or will be soon, it would still be early enough in terms of such developments to say ‘no’ if necessary. What is perhaps more important is that there is still room to understand and frame such developments in appropriate ways, since the technological and therapeutic imperatives have not yet been reshaped and the persuading ‘normative power of facticity’ (‘use them because they are available and others use them too!’) is not yet overwhelming.

A phantom?

With good reason, many of the visions discussed in the enhancement discourse can be seen as unrealistic or purely hypothetical. In a review article, pharmaco-psychologist Boris Quednow (2010) called the discussion on cognitive enhancement drugs a ‘phantom debate’ because it assumes that a technology ‘that will probably never materialize’ (Quednow 2010, p. 156) is in fact realistic. He states: ‘The assumption that, in the near future, we will have access to compounds that are not only effective cognitive enhancers, but also safe and well tolerated and therefore suitable to be taken by everybody’ (p. 154) is unlikely to be true. The same could be said about other enhancement visions. Gregory Stock’s ‘genetic molecule’ that one could ‘safely add to an embryo and thereby give your future child extra decades of healthy life’ (Stock 2002, p. 78) is intentionally kept vague. Molecular biologists are careful not to overstate the progress of genomics (Lander 2011), as we are currently far from seeing realistic genetic augmentation, and perhaps never will arrive at those radical enhancements that transhumanists ponder over.

This gap between what is dreamed of, feared, and debated and what is actually possible means that we need to reflect on the phenomenon of enhancement and its associated debates, to view it as a cultural phenomenon. The discipline of science and technology studies can contribute here, as it enables us to see technologies not as a given but as contingent and contextual. Through this lens, we can take a closer look at the consequences, at the ‘decisions, the trade-offs, the evidences and their interpretation within certain political strategies’ (Blume 2012, p. 352). Such an approach allows for the possibility to actually shape the developments and technologies, instead of simply observing and documenting them.

As pointed out above...

Table of contents

• Cover
• Title Page
• Copyright
• Contents
• List of Illustrations
• Acknowledgements
• Foreword: Five Thoughts About Enhancement
• Notes on Contributors
• 1. Refocusing the Enhancement Debate
• Part I: Norms and Body
• Part II: Case Studies
• Part III: Utopian Ideas and Real Embodiment
• Index